Background:
To address the increasingly strident call for better, more informed shared decision-making about treatment decisions and goals of care in patients with end-stage heart failure (HF), we designed and implemented a supportive care intervention for hospitalized patients with a very poor prognosis.
Methods:
All patients admitted to the advanced HF service at a single hospital over a 6-mo. period were screened for inclusion criteria (deemed non-candidacy for LVAD/transplantation and high likelihood for death or persistently poor quality of life at 6 months, based on the Allen risk score). Enrollees were given a written exercise, The Conversation Starter Kit, to complete with their healthcare proxy before an outpatient visit with a HF nurse practitioner (NP) trained in supportive care techniques. The intervention provided at this visit consisted of 5 domains: disease understanding, symptom control, legal matters, goals of care, and the role of the healthcare proxy. The KCCQ, PEACE Illness Acceptance Scale, Decisional Conflict Scale, and Kaldjian’s Goals of Care were collected at enrollment and 1 month after the intervention, along with 6-month outcomes of readmission and death.
Results:
Of 77 patients admitted to the service who were not candidates for advanced therapies, 16 met eligibility criteria. Nine declined participation and 7 of a planned 10 were enrolled; the pilot was terminated early due to low enrollment. Only 2 patients completed the intervention; reasons for not completing varied for the 5 remaining patients. (Table) Despite a pre-existing relationship between patients and NPs, rigorous facilitator training, and a comprehensive, evidence-based, outpatient intervention, significant barriers to implementation included patient reluctance/fear, uncertainty surrounding disease progression, time constraints of completing the intervention within a scheduled clinic visit, and lack of efficacy due to patients having too-advanced disease.
Conclusions:
An intervention to engage very high-risk, advanced HF patients in shared decision-making about end-of-life care failed to be successfully and sustainably implemented. Future work should assess the feasibility and efficacy of designing an early and iterative intervention in a larger population of HF patients with less advanced disease.
Shared Decision Making to Support the Provision of Palliative and End-of-Life Care in the Emergency Department: A Consensus Statement and Research Agenda